The government should appoint a commissioner to champion and protect the rights of people with learning disabilities, as reform of support services is too slow, according to Sir Stephen Bubb.
In a new report, ‘Time for Change – the Challenge Ahead’ Sir Steven admitted that the challenge of reforming support for people with learning disabilities – and moving people out of assessment and treatment units back into the community has been too slow. He also said that the latest proposals to deliver these changes – Homes not Hospitals by NHS England, published in October 2015 – are based on over-optimistic assumptions.
Sir Stephen was author of ‘Winterbourne View - Time for Change’ in November 2014, which called for the closure of inappropriate institutions and the ramping up of community provision and for government to legislate for a Charter of Rights for people with learning disabilities and their families.
The NHS published a closure programme subsequently, but the government has not moved on the Charter proposal, despite accepting the recommendation at the time.
Since the publication of the NHS proposals, Sir Stephen has undertaken an extensive consultation with people with learning disabilities, their relatives and service providers. His new report ‘Time for Change – The Challenge Ahead’ details the findings of this consultation. His main recommendation calls on the government to appoint a learning disabilities commissioner.
The underestimation of the challenge ahead is illustrated by the fact that NHS England’s proposals were based on there being 2,600 people in institutional units. Research since shows that figure could be as much as 33% higher at nearly 3,500.
‘The Challenge Ahead’ suggests that 10,000 extra members of staff will be needed to support people in their own community and that these staff need to be trained and equipped for the task.
Further, with at least 1,300 people expected to move out of hospital care by 2019 the report also details the critical need to deliver housing for the vulnerable. It says that housing for people with learning disabilities should be exempt from proposed Housing Benefit caps. The report details how additional housing provision might be delivered.
Sir Stephen also draws attention to the hundreds of thousands of children with learning disabilities and the challenges this could present to a sustainable future. He calls for a ‘prevention revolution’ that would see coherent and targeted early intervention preventing the need for future costly acute responses and resources.
Given the size of these challenges, and the failure to introduce a Charter of Rights, Sir Stephen says that a learning disabilities commissioner is required. The role would place a statutory duty on the holder to promote, enhance, and protect the rights of people with learning disabilities and their families in England and ensure the delivery of the reforms pledged by NHS England.
“I am calling for an office of a learning disabilities commissioner to be established. Just as a children’s commissioner was established following the Victoria Climbie Inquiry, there is a firm argument for establishing this post,” said Sir Stephen. “It would have a statutory duty to promote and protect the rights of all people with learning disabilities and their families.
“I have spoken directly to people whose experience of these services goes back far beyond 2011 and Winterbourne View. So this report expresses the views and experiences of the people most affected by change. I am still shocked by the way we as a society have condoned poor or abusive treatment of some of the most vulnerable people in our society.
“That's why I want a Commissioner.
“As recent revelations from Southern Health Trust have shown there’s still a long way to go before the system can be trusted and we still have a long way to go in convincing people with learning disabilities that change will happen. I'm confident the base for change is now there. ”
Opportunity to restore faith
Sir Stephen’s report has been welcomed by learning disability organisations. Jan Tregelles, chief executive of learning disability charity, Mencap, and Vivien Cooper, chief executive of the Challenging Behaviour Foundation, said in a joint statement: “People with a learning disability and their families have endured nearly 5 years of failure by national and local government and the NHS to bring about meaningful change for the 3,500 people in in-patient units. This has left people often far from home in units where they are at increased risk of abuse and neglect, their families fighting to bring loved ones home. This is taking place as the NHS and local government are spending an estimated £600 million a year on buying the wrong kind of care for thousands of people.
“[Sir] Stephen Bubb is right to say that NHS England's commitment to close in patient beds over the next 3 years will only have credibility if reductions in bed numbers in units and the experiences of people with a learning disability are independently monitored and reported on every year. And where progress is not being made there must be rapid intervention to get plans back on track.
“Now is an opportunity to restore faith, where so far there has been repeated failure, and build the community support people with a learning disability and their families want and have been promised.”
VODG chief executive Dr Rhidian Hughes also welcomed the report, saying: “We need to continue to seek constructive ways of building and sustaining good relationships across all parts of the system. This will ensure people with learning disabilities and autism exercise full choice and control over how they want to be supported.
“The transforming care programme requires significant change to be delivered, and we are not seeing re-provision out of assessment and treatment units happening at scale or pace. We need to build up capability and capacity to ensure the right support is in place to allow people with learning disabilities to achieve their aspirations and choices.”